33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and Consultant

The Rare Disorder Podcast

In this episode, I chat with Ella Balasa, a Patient Advocate, Speaker, and Consultant.

Ella is passionate about amplifying the patient voice in healthcare.

Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, her work in the lab intersected with her health. This fueled Ella's interest in involving herself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. Simultaneously she developed a passion for writing, sharing her research experiences and introspectively writing about life with a chronic disease. ​

When Ella became very ill in the winter of 2019 with an exacerbation of the bacteria in her lungs due to CF, these experiences and interactions with researchers gave her the confidence to leverage her voice – and pursue an experimental treatment called phage therapy. Ella sought out and coordinated her treatment directly with researchers at Yale University. Being one of a few patients in the US who had tried this therapy, her experience was documented by the Associated Press. Because of the success of her treatment, Ella wanted to share about her experience to increase visibility for a viable alternative for other patients facing drug resistant infections. The exposure provided a platform from which Ella established herself as a patient advocate, publishing her experience, empowering other patients also battling infection, and inspiring the research community in further pursuit of phage research.

Since then, Ella has spoken publicly at various conferences, congressional meetings, the Milken Institute, and the FDA about the need for the development of novel therapies for the treatment of antibiotic-resistant infections. Ella has been published in medical journals, she is a patient reviewer for BMJ journal, and on the board of directors of the US Adult CF Association, a CF non-profit committed to educating and supporting the CF community. Ella believes that understanding the patient experience is vital to healthcare companies, researchers, and initiatives and receiving this information through solution focused patient advocates facilitates both the disease community and all other stakeholders to advance medical progress together.​

Learn more about Ella & her work!

Website: https://www.ellabalasa.com/

Instagram: https://www.instagram.com/ellabalasaadvocacy/

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